To compare the attitudes of neonatologists, neonatal nurses, the parents of extremely low birth weight (ELBW) children, and the parents of normal birth weight children toward saving infants of borderline viability and who should be involved in the decision-making process and to compare physicians' and nurses' estimates of the proportion of infants who are born at various gestational ages with regard to survival, morbidity, and treatment.
A questionnaire was given to 169 parents of ELBW children and 123 parents of term children, who were part of a longitudinal study of the outcome of ELBW infants. A similar questionnaire was completed by 98 Canadian neonatologists and 99 neonatal nurses.
Physicians tended to be more optimistic than nurses regarding the probability of survival and freedom from serious disabilities and would recommend to parents life-saving interventions for their child at earlier gestational ages. A significant majority of parents believed that attempts should be made to save all infants, irrespective of condition or weight at birth, compared with only 6% of health professionals who endorsed this. In contrast to parents, health professionals believed that economic costs to society should be a factor in deciding whether to save an ELBW infant. However, health professionals did not believe that the economic status of the parents should be a factor, although the stress of raising an infant with disabilities should be. Most respondents believed that the parents and physicians should make the final decision but that other bodies, such as ethics committees or the courts, should not.
Health care professionals must recognize that their attitudes toward saving ELBW infants differ from those of parents. Parents, whether of term or extremely premature children, are more in favor of intervening to save the infant irrespective of its weight or condition at birth than are professionals. It therefore is imperative that there be joint decision making, combining the knowledge of the physician with the wishes of the parents.
Demands by Patients or their Families for treatment thought to be inappropriate by health care providers constitute an important set of moral problems in clinical practice. A variety of approaches to such cases have been described in the literature, including medical futility, standard of care and negotiation. Medical futility fails because it confounds morally distinct cases: demand for an ineffective treatment and demand for an effective treatment that supports a controversial end (e.g., permanent unconsciousness). Medical futility is not necessary in the first case and is harmful in the second. Ineffective treatment falls outside the standard of care, and thus health care workers have no obligation to provide it. Demands for treatment that supports controversial ends are difficult cases best addressed through open communication, negotiation and the use of conflict-resolution techniques. Institutions should ensure that fair and unambiguous procedures for dealing with such cases are laid out in policy statements.
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Providing expert critical care for the high acuity patient with a diagnosis of COPD at the end of life is both complex and challenging. The purpose of this descriptive study was to examine intensive care unit (ICU) clinicians' perspectives on the obstacles to providing quality care for individuals with COPD who die within the critical care environment. Transcripts of three focus groups of ICU clinicians were analyzed using thematic analysis. The three themes of "managing difficult symptoms", "questioning the appropriateness of life-sustaining care" and "conflicting care priorities" were noted to be significant challenges in providing high quality end of life care to this population. Difficulties in palliating dyspnea and anxiety were associated with caregiver feelings of helplessness, empathy and fears about "killing the patient". A sense of futility, concerns about "torturing the patient" and questions about the patient/family's understanding of treatment pervaded much of the discourse about caring for people with advanced COPD in the ICU. The need to prioritize care to the most unstable ICU patients meant that patients with COPD did not always receive the attention clinicians felt they should ideally have. Organizational support must be made available for critical care clinicians to effectively deal with these issues.